For Your Visit to the Epidermolysis Bullosa Clinic

Please contact our nurse coordinator to discuss if this is the right clinic for your child. New patients require a referral from a physician. The patient consultation form (PDF) should be completed and faxed to (650) 736-0736.

Before your first clinic visit

One of our staff members will mail you a packet of information and forms to fill out before your scheduled appointment. These forms will provide us with important information which enables us to better care for your child. Please complete these forms prior to your visit with us and fax them to (650) 736-0736.

First clinic visit

Our team will spend much of the first clinic visit getting to know your child. This visit will take at least two hours.

Please have the the following information available at your child’s first EB clinic visit (if you did not fax it to us beforehand):

  • The completed packet of information and forms
  • Medical records for our review, including laboratory results, biopsy results, genetic testing results, and your child’s growth chart
  • List of current medications
  • Your child's primary care provider's contact information
  • Bandaging materials for one dressing change. Our clinic staff can assist with wound care during the visit, if needed.

After this comprehensive visit, we will send a report to your child's primary care provider to ensure continuity of care.

Subsequent clinic visits

The length of your child’s clinic visit will vary based on your child’s health care needs. A complete visit consists of:

  • Discussion of your questions and concerns
  • Evaluation by our team of doctors
  • Meeting with our social worker
  • Full skin examination with a dressing change (assisted by our staff)
  • Photographs
  • Laboratory tests

Please bring the following to each clinic visit to help us provide quality care for your child:

  • List of current medications
  • Your child's primary care provider's contact information
  • Bandaging materials for one dressing change. Our clinic staff can assist with wound care during the visit, if needed.